An Oxygen Scare Left Me with No Choice

An Oxygen Scare Left Me with No Choice

Just breathe, passionate help for the PF journey

I had a scare when using oxygen last week.

It’s not unusual to have my oxygen levels off target from kinks in my cords. And I’ve accidentally set the liters-per-minute dial too low. But last week was different.

I was getting ready to go to a massage appointment. I do this once a month, as it helps ease my aches and pains so much. My husband was filling my liquid oxygen portables to bring with me, and for a reason we couldn’t figure out, none of them dispensed the oxygen. The three portable strollers were full, but no oxygen was coming out of any of them!

We guess the oxygen was too cold to dispense since the tanks were freshly filled by my home healthcare provider. Whatever the reason, it was scary and disappointing. I had my appointment, but I couldn’t even leave my house.

It was the first time that happened.

I couldn’t leave the house because I didn’t have oxygen. I cried a lot and canceled my appointment. I hated to do it, but I had no choice. The reality is that I stay home most of the time, but it’s my choice to do so. This time, it wasn’t. It felt so awful. I was very upset.

My husband hugged me, and I went and laid down and had a good cry. This released my emotions and helped clear them out. In the evening, we talked more about it and did some problem-solving.

The portables did start releasing oxygen after about 20 minutes and haven’t given me a problem since. We decided to always load up the portables I might need an hour before I need them, rather than wait until the last minute. Then if this happens again, the tanks will have time to reset themselves.

It was so hard to have no choice.

When it came down to it, the hardest thing was having no choice to go out. No one has to worry about that as we do. Healthy people don’t have to lug around tanks or be worried they’ll run out of oxygen and go into a crisis. I never used to worry about any of that, but now it is a concern that fills every day in some way.

I, like you, have lost so much because of pulmonary fibrosis. I tend to grieve the losses and enjoy all the good that is still available to me. When one of those is threatened, or taken away, it hits me hard.

How about you?

I know there is no way that I’m the first to have something like this happen. It was just the first time it happened to me. When have you experienced something similar? How did you handle it?

Please leave a comment below, and share with those who could benefit via email or on social media. We’re in this together!

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

8 comments

  1. Ray Hastings says:

    i use oxygen concentrators. i have large unit at home and portable unit for travel. about 3 weeks my home unit died, i called my 02 supplier and they said they woulgft someone out to check it out, i wasn’t too concerned because my portable can also function as a home unit but two weeks went by and i had not heard from them so i called the guy that delivers my o2 supplies. he was scheduled for a regular delivery 4 days later, he showed on on his regular time with a new home unit. i was very happy that i had bought the portable. It is important to set up an alternate supply for this type of situation. trying to find someone to help you when something happens to your supply. i love my portable and feel comfortable that it gives me a back up solution .

  2. Joyce Douglas says:

    I’m really sorry that happened to you Kim. It is a very scary situation. What I suppose happened is that, as you say, the oxygen was too cold to flow. I live in MB Canada and our outside temp is below 0 Celsius or 32F most day. I have to put my trust in my portable oxygenator and believe that it will get me to my destination. A time or two I have forgotten to turn on the portable and when I arrive it takes me a minute or two to realize there is no air coming out of the cannula. Panic!! Then I realize I didn’t turn it on. Scary and I kick myself for being so careless. I haven’t had the need for oxygen until last May, 2017 so it is relatively new and I am able to manage (tho with low blood oxygen count) for a wee while. I have learnt to be more careful. So far so good. Will say a prayer for you and prompt oxygen supply when you need it.

  3. Barbara Barr-Haylock says:

    Freezing up can be an issue with LOX strollers and standard practice says to let them sit 15-20 mins to rest. Freezing can be a particular problem during humid weather.

    Most of the time we “get away” without the rest period. However, that being said, to have 3 strollers freeze up at the same time is unusual. Another thing to remember is to wipe the reservoir nozzle as dry as possible between refills.

  4. Lea says:

    My portable machine broke at the grocery store and I had an anxiety attack! A full blown Asperger’s meltdown is what I had!

    I can laugh now.

  5. Erica says:

    It does get overwhelming sometimes…the things you used to take for granted and that others still do. The loss of your freedom to just get up and decide to go out….nope! Now, you must plan and pack…and even then…plans often don’t go the way you want…life has a different plan for you! The weight and bulk of the portables, the limited time available, the freeze ups, being stared at…it all frustrates. You had the best plan…have a good cry, get a hug if possible! Then eventually, wipe your tears, blow your nose and keep moving!

  6. Roy Tindall says:

    Strange, I had a similar incident today. A newcomer to ‘L.O.X. I charged one stroller up but and hour or so later it would not let out the Oxygen. The other stroller would no take Oxygen in and I have still not managed to fill it.
    Luckily I still had ambulatory bottles so could use those but it did give me a lot of thought if this had not been the case and I would have had no access to Oxygen. Scary isn’t it.

  7. Peggie West says:

    I have no experience with liquid oxygen, but I think we’ve all had those scary times when, unexpectedly, we find our battery powered portable has run down, or our portable canister has run out too soon. I am mad at myself when this happens and I get so panicky so fast. I always have a secondary oxygen source with me when I go out and my husband is there to quickly fix any problem. It’s at those times that I realize I can’t control this disease and I’m frustrated that I have to depend on this machine to live. As all of us have these days, I think we should just learn to accept it, be mad, cry, whatever it takes to get us back to our center….and that is to make the best of this situation that we can and continue to live our lives. Even with all this baggage we travel with, at least we are mobile. I am grateful for that, and always say Thank you God, right after I finish cussing 🙂

  8. Jacqueline Smith says:

    I always keep two small green oxygen tanks with on demand regulators in my car.
    I once had my frozen liquid oxygen dispenser suddenly release all of its oxygen when a valve failed. If I hadn’t had a backup I would have been in danger of having no oxygen.

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